What does neuropathy feel like?

[navydad]

At this point in my neuropathy,, I would consider almost anything,, I;m really tired of it,, most of the meds I have tried havent done muich for the burning and odd skin sensations,, I cant explain it to anyone without getting the eyebrows raised like I have lost my mind,, the head rushes as I call them are sometimes the worst, it seems like my head jsut freezes up along with my brain,,

[kwolfsheimer]

kwolf, your description matches my own sensations almost perfectly. Unfortunately there are times when my numbness suddenly extends to my entire body including my head. At that point I feel like I'm off in another world and this one doesn't quite register. At that point there's nothing to do but lay down.

A lot of people take and talk about Gabapentin/Neurontin for these types of problems. Results vary, some great some not so. The heavy hitter seems to be Baclofen.

I just got off of Neurontin-- it didn't work and caused me to have extreme dizziness, vomiting.  It had been prescribed for the severe pain that I have in my hips-- it would have been a bonus if it had worked for the neuropathy.

I am having stomach issues right now, so all my energy is focused on that. I always feel like I am putting out forest fires-- if it's not one thing, it's another.  The neuropathy is very troubling though.  For example, we drove down to Florida and I really couldn't help my husband out because my hands hurt so bad-- joint pain and now tingling.  For instance, as I type, my right foot and toes are tingling like they are asleep. And I've only been here a few minutes!

I am about to try Etrafon for my stomach issues. I've heard it can also work as a pain reliever.  I'll report back if I have any luck.

[harlin]

I don't know if this is neuropothy or not. I am still not sure what it feels like.

This is what I feel like. Pins and needles thru out my legs, legs jump and won't settle down. I sometimes have the same feeling in my arms too. If I take a flexiril at night they will stop long enough to get some sleep. Mornings are ok but if I am on my legs very long, they start again.

Is this neuropothy? I have a dr apt on Tuesday.

[dbab]

Mine sorta feels like bugs crawling on me... I'm deathly afraid of bugs so I'm always look like a spaz swatting away nothing on my legs.

[harlin]

That's it!! That is exactly how I feel. Is that Neuropothy?

[dbab]

That's it!! That is exactly how I feel. Is that Neuropothy?

are you talking about the bugs feeling?  according to my doctor, yes that is the symptom I experience with my peripheral neuropathy

[dbab]

harlin,  In reading your post again, I wouldn't rule out RLS.  Has your doc checked for that?  I know the feelings can be similar to neuropathy and the fact that you are having trouble keeping your legs still is the classic sign (especially at night).

ETA: just read in your sig that you have that already... sorry lol - I'm thinking thats what is ailing you but you may want to make sure

[CAT1962]

Harlin,

It does sound a lot like RLS. I had a sleep study done last spring and they said I had that. I don't take meds for it.

[Patty]

Yes, I have sensory neuropathy and had the same symptoms at onset. I also had tingling sensations which started in my feet and spread upward. Unfortunately, I don't thing there is a good way to confirm it with testing. My NCV and EMG tests were normal. A sural nerve biopsy was inconclusive. I was treated based on symptoms and response to meds. Later I developed more symptoms that confirmed neuropathy. If anyone wants to do a sural nerve biopsy on you, say "no"! They are often unhelpful and 5 years later, I still have nerve pain from it.

[navydad]

I had the sural nerve biopsy too,, worst thing I ever did,,, but,,, when Pittsburgh read it,, they said it showed next to nothing,, the slides were sent to Mayo, where it showed a wealth of information, but I still regret getting it done fro a few reasons,,, what teh info showed was not followed up on even with my screaming to high heaven,, and yes,, I still have problems with the side of my foot being numb,,but I knew that going in,,, but not this bad,, sometimes you just dont get the whole story

[navydad]

I started slipping off ladders at work,, had no clue where I was putting my feet, the tingling started and then the awefull buugs crawling on my skin,, progressed to problems with a lot of sensory stuff,, mildy cool felt like a iceberg ,, hands that dont work and twitch, oh heck, its a real mess

[Patty]

Neurontin and Lyrica did nothing for me so I quit taking them. Pamelor does work for me and taking it before bed also helps me sleep better.